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        Cluster Headache Help and Support >> Cluster Headache Specific >> New and Unusual Med. Combo Working
        
(Message started by: docblondie on Jul 29th, 2007, 11:34am)
Title: New and Unusual Med. Combo Working
Post by docblondie on Jul 29th, 2007, 11:34am
I'm a 39yo female, 135lbs
I've had clusters-episodic- since 1989. Cycle was 11mos. free, 6mos. headaches.  Nothing worked as a preventive other than high doses of prednisone- 80 to 20mgs over 1 month, then start all over again- for the 6 month duration of the cycle.
In 2001,  I went chronic. After many failed neuro. consults and med. combos. and not able to stay on that high of a dose of pred. long term,
I finally ended up in Dr. Maria Carmen-Wilson's office at Tampa General Hospital; Rehabilitation Clinic for Pain Management and Neurology. (Tampa, FL)  She prescribed the following combo;
Verapamil 320mgs/day
Topamax 400mgs/day
Prozac 40mgs/day
Bellergal S tabs 2x a day **This is the new/unusual med
Serequel 25mg/day **This is the 2nd new/unusual med
Bellergal S tabs has Ergotamine, Phenobarbitol and Beladonna in it (odd combo)
Serequel, I only use at night as it makes me so sleepy!
On this combination- I have been headache free for almost a year.
Hope some of you will be able to take this to your neuro. and try the new combo of Bellergal and Serequel.
Best wishes,
Chris
Title: Re: New and Unusual Med. Combo Working
Post by Lotus on Jul 30th, 2007, 5:27am

Thank you Chris for sharing your experience. Its great that the med combo has worked well for you.

Its interesting to note that all the meds you mentioned, apart from Bellergal are all first line treatments for bipolar or schizophrenia.
Title: Re: New and Unusual Med. Combo Working
Post by MR_FLOOR on Jul 30th, 2007, 6:02am

on 07/29/07 at 11:34:42, docblondie wrote:
I'm a 39yo female, 135lbs
I've had clusters-episodic- since 1989. Cycle was 11mos. free, 6mos. headaches.  Nothing worked as a preventive other than high doses of prednisone- 80 to 20mgs over 1 month, then start all over again- for the 6 month duration of the cycle.
In 2001,  I went chronic. After many failed neuro. consults and med. combos. and not able to stay on that high of a dose of pred. long term,
I finally ended up in Dr. Maria Carmen-Wilson's office at Tampa General Hospital; Rehabilitation Clinic for Pain Management and Neurology. (Tampa, FL)  She prescribed the following combo;
Verapamil 320mgs/day
Topamax 400mgs/day
Prozac 40mgs/day
Bellergal S tabs 2x a day **This is the new/unusual med
Serequel 25mg/day **This is the 2nd new/unusual med
Bellergal S tabs has Ergotamine, Phenobarbitol and Beladonna in it (odd combo)
Serequel, I only use at night as it makes me so sleepy!
On this combination- I have been headache free for almost a year.
Hope some of you will be able to take this to your neuro. and try the new combo of Bellergal and Serequel.
Best wishes,
Chris

Hey Chris,

I think you mean sinaquan.The generic name for that drug is doxepin and yes I have had this combo exept the Bellergals were on sort of  a taper when I took them like I started off with 2 and then went to 1 I can't remember exactly how it went and the Topamax was not in my combo and Prozac was not in my combo and its been awhile but I think the generic for Bellergals is Bellaplas or something like that .The Bellergals are suppose to break the cycle I think,like I said it's been awhile.But you are the first person that I have seen post with those 2 meds(Sinaquan and Bellergals)I thought I was the only one that took them.And to answer your question yes I had some success with both of them.




Dave  
Title: Re: New and Unusual Med. Combo Working
Post by Bob P on Jul 30th, 2007, 7:26am
Chris,

Just wondering if you have considered dropping the meds one at a time to see if they are all needed incombo or if it is really one of the meds that is working and you don't need the rest?
Title: Re: New and Unusual Med. Combo Working
Post by nani on Jul 30th, 2007, 9:00am

on 07/30/07 at 05:27:02, Lotus wrote:
Its interesting to note that all the meds you mentioned, apart from Bellergal are all first line treatments for bipolar or schizophrenia.


Huh? Which ones are for bi-polar/schizophrenia? I've heard of Seroquel used by bi-polars...as a sleeping pill.
Please enlighten me.

/spelling
Title: Re: New and Unusual Med. Combo Working
Post by docblondie on Jul 30th, 2007, 9:06am
Responding to your responses....
1st, yes they are first line tmts. for schiz. and bipolar- but also frontline tmts. for epilepsy and menopause. These agents work to manipulate the hypothalamus and pituitary glad in similar ways when prescribing for other disorders.
No, I don't mean Sinequin, I have been on that, with no luck.  I mean Serequel 25mgs/day

Finally, yes I have tried decreasing the dose of one of these to see if it is the combo or just one-  whenever I go off one, or just taper down one, within a few days, the headaches return.  I have tried increasing one while tapering down another. I have tried multiple combos of trying to taper these and it seems that it is this particular combination that is working.
Title: IRe: New and Unusual Med. Combo Working
Post by billyjoe on Jul 30th, 2007, 10:01am
I feel for you.  That is quite the como you've got going.  That much Topo would drive me batty.

Best of Luck!
Title: Re: New and Unusual Med. Combo Working
Post by vietvet2tours on Jul 30th, 2007, 1:58pm

on 07/30/07 at 09:06:25, docblondie wrote:
Responding to your responses....
1st, yes they are first line tmts. for schiz. and bipolar- but also frontline tmts. for epilepsy and menopause. These agents work to manipulate the hypothalamus and pituitary glad in similar ways when prescribing for other disorders.
No, I don't mean Sinequin, I have been on that, with no luck.  I mean Serequel 25mgs/day

Finally, yes I have tried decreasing the dose of one of these to see if it is the combo or just one-  whenever I go off one, or just taper down one, within a few days, the headaches return.  I have tried increasing one while tapering down another. I have tried multiple combos of trying to taper these and it seems that it is this particular combination that is working.
 No mention of Oxygen?
Title: Re: New and Unusual Med. Combo Working
Post by Lotus on Jul 30th, 2007, 6:49pm

on 07/30/07 at 09:00:52, nani wrote:
Huh? Which ones are for bi-polar/schizophrenia? I've heard of Seroquel used by bi-polars...as a sleeping pill.
Please enlighten me.

/spelling




You obviously dont know much about bipolar nor schizophrenia, its going to take a looong time to enlighten you on this subject.

First Seroquel is an antipsychotic and is used to treat the psychosis in schizophrenia, it is also first line treatment for the acute mania phase for bipolar disorder. Its most common side effect is drowsiness so its often taken at night and it can help aid sleep.

I dont know what source you heard from that Seroquel is taken as a sleeping tablet but you heard wrong, or you didnt understand the full mechanism of how the med is used.

Topamax and Prozac are well known, I hope I dont have to explain them to you in details, do I?

The combination of Prozac, Seroquel and Topamax is commonly used as first line treatment for bipolar and in some cases schizophrenia. Some psychiatrists also add Verapamil as it does have a stablelisising effect on moods in some people, although not potent enough to be used as such on its own.

Dont believe me? Go check with your psychiatrist.
Title: Re: New and Unusual Med. Combo Working
Post by Lotus on Jul 30th, 2007, 6:53pm

on 07/30/07 at 07:26:06, Bob P wrote:
Chris,

Just wondering if you have considered dropping the meds one at a time to see if they are all needed incombo or if it is really one of the meds that is working and you don't need the rest?



I cant believe you would advise someone who has been suffering for so long, whose meds are working well for the first time to be painfree to stop/drop their meds ????????  ::)
Title: Re: New and Unusual Med. Combo Working
Post by Rosybabe on Jul 30th, 2007, 8:27pm
Hi Chris!!

I am glad you found something that keeps the beast away, don't matter if it is a combo or a single pill as long as you are pain free and you are able to handle side effects..I don't  do good with to many meds, that is just me, but if it works for you..Good luck and many more pain free days for you!!  :)

                                        Rosy.
Title: Re: New and Unusual Med. Combo Working
Post by docblondie on Jul 30th, 2007, 8:46pm
I use Oxygen for an abortive- along with imitrex injections.
What I listed are preventative meds.
Title: Re: New and Unusual Med. Combo Working
Post by thebbz on Jul 30th, 2007, 9:19pm
Chris,
Do you work outside of the home? If so how does this combo effect your efficiency and stamina? Thats alot of neurochemical manipulation.  :oI am currently researching this. :-X I am not a doctor and am concerned should someone want to treat me with such a combo. [smiley=hurl.gif] Hope you doing well enough to function and maintain an income. How in your judgement is your quality of life on this treatment?
thebb
Title: Re: New and Unusual Med. Combo Working
Post by docblondie on Jul 30th, 2007, 11:04pm

on 07/30/07 at 21:19:05, thebbz wrote:
Chris,
Do you work outside of the home? If so how does this combo effect your efficiency and stamina? Thats alot of neurochemical manipulation.  :oI am currently researching this. :-X I am not a doctor and am concerned should someone want to treat me with such a combo. [smiley=hurl.gif] Hope you doing well enough to function and maintain an income. How in your judgement is your quality of life on this treatment?
thebb

You pose excellent questions. I am looking into surgery as I cannot tolerate the meds. long term- or don't want to.  Luckily, I am able to teach on-line, from home, which allows me a great deal of free time to take things slow.
I am able to bring in an income and support myself while only working part-time. I don't know if I could work full time- the side effects are too numbing.
I am exhusted from the Topamax and Verapamil combo. My BP last Dr's. visit was 87/54
Mix in all the other meds. and side effects, it's tiring just to think about it.  The confusion and memory loss from Topamax is the worst. I feel like a dementia patient, only aware of what is happening. It's sad to watch your mind deteriorate- especially after being successful in a career in Higher Education.  I have a PhD in psyc. and am looking at the reality that I will never hold a faculty position again.  Sad.
Quality of life-  even with the side effects and exhaustion, it is much better compared to battling the chronic, daily CH's.
I would not be able to work at all if I didn't have this combo. of meds.
I have resigned to the face that I just have to get through life being tired and struggling with comprehension/memory at times.  It's better than having headaches.
I realize this is a huge, possibly toxic combination of meds. for long term. However, when I got in to Tampa General's Clinic I had already been trying different combos for 4 years- which helped but never stopped the headaches- I was still not functioning well with the daily headaches.  Then, when Dr. Wilson added the Bellergal S tabs and Seroquel, it all seemed to click and work together and I have not had a headache since Sept. '06  I have tried coming off one of these at a time, increasing one while decreasing another- all the combinations to get to the least amount of medication I need. Each time I try to adjust any of the meds, in any was- the headaches return within a few days or a week. I'll have to stick with this until something changes.
Hope you find something encouraging with your research.  
~Chris
Title: Re: New and Unusual Med. Combo Working
Post by thebbz on Jul 31st, 2007, 12:12am
You keep hangin tough Chris. Have you looked into alternatives? I would consider this before surgery. What have you got to lose..eh. That pain sure will put you in a corner wont it. I wouldn't give up on a staff position just yet. Talk to your doc about....clusterbusters.com
See if you can avoid the knife.
all the best to you ;;D
thebb
Title: Re: New and Unusual Med. Combo Working
Post by nani on Jul 31st, 2007, 12:45am
You said:


on 07/30/07 at 05:27:02, Lotus wrote:
Its interesting to note that all the meds you mentioned, apart from Bellergal are all first line treatments for bipolar or schizophrenia.


The meds Chris mentions are:
Verapamil   ( a calcium channel blocker)
Topamax    (an anti-seizure med)
Prozac        (an antidepressant)
Bellergal and Seroquel

Since I don't have a psychiatrist, I'm not familiar with all the possible off label uses and combos to treat bi-polar. Do you know this from personal experience, or do you have a link?
My (I'll admit somewhat limited) understanding is that bi-polars shouldn't use anti-depressants. And, with my also limited knowledge of schizophrenia, have never heard of this combo. I assumed it was still being treated with standard anti-psychotics like thorazine and compazine. The two CH drugs that are common treatments for bi-polars are lithium and Depakote. An off label use for zyprexa is as a CH abortive (in smaller doses than used as an anti-psychotic). Where might verapamil fit into a mental health use? Oh, and as you stated, Seroquel can treat the mania phase, where as you know, people have a hard time sleeping. It's used at bedtime so they can sleep.

Chris, I'm with the BBZ here... look at alternatives before surgery.
pf wishes, nani, who broke a 5 year chronic cycle with clusterbuster treatments
Title: Re: New and Unusual Med. Combo Working
Post by rolo65 on Jul 31st, 2007, 1:09am
All I can say is that I was at my worst when I was cocktailed out on all those meds.

I personally would rather live with scuba gear 24/7 than to be sooo drugged out, but then again the drugs don’t work for me so that kind of bends my opinion a bit.

With the cost of all those meds you could be on pure O2 24/7 for probably less payola.

I would be in such a stupor that I’d probably get away with shooting the doc that put me on all that crap at one time, if I could remember how to get to his office. :)

Good luck, PF wishes,

Rolo..
Title: Re: New and Unusual Med. Combo Working
Post by tommyD on Jul 31st, 2007, 6:56am

Quote:
I cant believe you would advise someone who has been suffering for so long, whose meds are working well for the first time to be painfree to stop/drop their meds ????????  


I can't believe you would encourage someone to keep taking drugs they don't need.

-tommyD
Title: Re: New and Unusual Med. Combo Working
Post by Lotus on Jul 31st, 2007, 7:01am

on 07/31/07 at 06:56:57, tommyD wrote:
I can't believe you would encourage someone to keep taking drugs they don't need.

-tommyD



When and where did you see me encourage people to take meds they dont need?

What meds people should be on and what dosages they should be on is the private matter between themselves and their treating doctors.

Title: Re: New and Unusual Med. Combo Working
Post by Lotus on Jul 31st, 2007, 7:12am

on 07/31/07 at 00:45:48, nani wrote:
You said:


The meds Chris mentions are:
Verapamil   ( a calcium channel blocker)
Topamax    (an anti-seizure med)
Prozac        (an antidepressant)
Bellergal and Seroquel

Since I don't have a psychiatrist, I'm not familiar with all the possible off label uses and combos to treat bi-polar. Do you know this from personal experience, or do you have a link?
My (I'll admit somewhat limited) understanding is that bi-polars shouldn't use anti-depressants. And, with my also limited knowledge of schizophrenia, have never heard of this combo. I assumed it was still being treated with standard anti-psychotics like thorazine and compazine. The two CH drugs that are common treatments for bi-polars are lithium and Depakote. An off label use for zyprexa is as a CH abortive (in smaller doses than used as an anti-psychotic). Where might verapamil fit into a mental health use? Oh, and as you stated, Seroquel can treat the mania phase, where as you know, people have a hard time sleeping. It's used at bedtime so they can sleep.



I am not here to discuss meds for bipolar or schizophrenia, its the wrong board for that. I can tell you as a practising GP that Topomax, Seroquel and Prozac is a combo very commonly used for bipolar and in some cases schizophrenia. Whether you believe me or not its your choice. You can go ask your GP, he or she would know this too.

In fact, some people here have bipolar as well as CH and indeed they are very familiar with such use of those meds.

By the way, why dont you go to a Bipolar support chatroom and try telling people there that they should not be on antidepressant? Or telling them that Seroquel use for bipolar is off label? Your understanding of bipolar is indeed very limited.

All I wanted to comment in this thread in response to Chris is that it is interesting to see how these meds designed for bipolar and schizophrenia can also be used with success for CH, same as zyprexa.
Title: Re: New and Unusual Med. Combo Working
Post by docblondie on Jul 31st, 2007, 8:10am
Hello Fellow supporters,
Just to make sure I'm clear in what I am sending-  I will research surgery prior to that decision.  Something I may have failed to get across; this combo is my last chance/try anything before surgery.  I have tried it all- short of heavy narcotics all the time, which I would lose my life basically.  The O2 works for abortive for me- makes no difference if I am on it 24/7 Been there done that.. I've tried it all- trust me, it's been 17 years of trying to find meds that prevent after going chronic in '02, the search became more intense and more trial/error with different solutions.  This finally works. Options I have before me if I need to change the meds I am on- or they stop working;
Back to high doses of Prednisone.
Try Narcotics 24/7
Neither of these seem possible- the prednisone will send me right back to where I was before this combo worked- (organs on the brink of failing) Naracotics will most definately end my quality of life- as you all know the amount of narcotics we have to take/be on to dull the pain- I will be an addict immediately and unable to work to support myself.
My question now is--do I pursue the surgery when I am healthy or wait for my body/organs to deteriorate more to where recovering from that kind of surgery would be more difficult?  Ay Yay Yay!
BTW; another thought on the seroquel, my dose is 25mgs.  I work with Bipolars and know their dose is 200mgs 4x a day- total of 800mgs a day-  Huge difference in treatment.
Yes, I will wait for the surgery- but wonder when the best time is to have it-  what do you think?
Title: Re: New and Unusual Med. Combo Working
Post by BarbaraD on Jul 31st, 2007, 9:17am
What kind of surgery are you talking about? I've had a stereo-tactic radio-frequency trigiminal rhizotomy and it didn't work and now I'm numb on the left side, have optic nerve damnage and a paralyzed left jaw muscle (it was my last hope at the time - 99).

If the meds are working - don't even consider the surgery (my opinion). Topamax has been my miracle drug (my leveling out dosage is 100mg which I'm on now) and Trazadone (anti-depressant) along with it. I've taken it since 99 and it's given me a lot of good results. I still get breakthrus, but it beats 8-12 headaches a day. I take all my meds at night and don't experience the "bad" side effects that others report.

I've been up to 400mg of topamax, but got suicidal (didn't realize it, but someone who knew me well realized it and got me back down to a dose that stopped that).

We're all different and what works for one won't work for the next. And it doesn't matter what it's "normally" used for - if it works on CH - so what? Lordy, when I was episodic - one episode this neuro put me on something for post-partum bleeding and it worked that cycle - pharmachist eyed me funny (at my age) but the darn stuff worked that cycle = didn't do a thing the next.

But just a hint (from years of experience with the stuff) take the topamax at night and see if the side effects slow down a little.

Hugs BD
Title: Re: New and Unusual Med. Combo Working
Post by LeLimey on Jul 31st, 2007, 2:54pm
Whilst I view surgery for CH with a fair degree of horror having known a few personal tragic stories from sufferers I have met I have to ask if you have researched the ONSI procedure as an alternative to DBS? This one at least is not invasive although I'll be very honest Chris and say that unless someone had tried every med combo to no success including alternatives I would do everything I could to talk them out of surgery.

Surgery (in my opinion) is for people who have absolutely no quality of life left. I hope you never get to that point but please understand that whilst we have reservations about the efficacy of surgery we will support you with your choices.

All we want is to make sure that you have all the information, the good and the bad to make YOUR decision about how todeal with YOUR life. We aren't attacking you, just playing Devils Advocate although I understand how sometimes badly worded posts can seem like an attack. I'm from England (duh!) and we do phrase things differently which might seem abrasive sometimes but I can assure you that isn't my intention and I'll do all I can to help you find out about ALL your options. I know we have chatted in your past visits to ch.com and I was sorry to see you come back with the news that things hadn't improved dramatically. I know you are pretty much pain free but it is at a high price.

Stick around, if nothing else we can support you and maybe make you smile once in a while! No one should be alone with this and now you've found us you don't need to be.

Helen
Title: Re: New and Unusual Med. Combo Working
Post by Brewcrew on Jul 31st, 2007, 5:16pm

on 07/31/07 at 08:10:25, docblondie wrote:
Yes, I will wait for the surgery- but wonder when the best time is to have it- what do you think?

Only after you've tried the hallucinogenic route.

www.clusterbusters.com
Title: Re: New and Unusual Med. Combo Working
Post by thebbz on Jul 31st, 2007, 5:51pm
Thanks Brew. ;;D
thebb
Title: Re: New and Unusual Med. Combo Working
Post by docblondie on Jul 31st, 2007, 11:13pm
Thanks for all your posts- insight and info on the surgeries available.  I will take my time and investigate prior to any decisions.  Helen- I am thinking the DBS not the trigem. riz. I have heard that is not very effective, and your story adds to the pile.
I will keep you all posted on my progress.
Cheers and pfd's ahead!
Chris
Title: Re: New and Unusual Med. Combo Working
Post by Brewcrew on Jul 31st, 2007, 11:19pm

on 07/31/07 at 17:51:45, thebbz wrote:
Thanks Brew. ;;D
thebb

;)
Title: Re: New and Unusual Med. Combo Working
Post by LeLimey on Aug 1st, 2007, 2:47am
Chris ONSI is different to the trig riz op.
It's a Occipital Nerve Stimulator Implant, more and more of those are being done all the time it seems and its quite different - it can also be reversed or so I understand. I'll try and find some more info for you (and anyone else reading this thread) just so you have the facts - NOT 'cos I endorse it! If ever I was going to try surgical options I'd try this one before DBS though.
Title: Re: New and Unusual Med. Combo Working
Post by Klusterkopf on Aug 1st, 2007, 8:33am

on 08/01/07 at 02:47:03, LeLimey wrote:
Chris ONSI is different to the trig riz op.
It's a Occipital Nerve Stimulator Implant, more and more of those are being done all the time it seems and its quite different - it can also be reversed or so I understand. I'll try and find some more info for you (and anyone else reading this thread) just so you have the facts - NOT 'cos I endorse it! If ever I was going to try surgical options I'd try this one before DBS though.


DBS can be reversed, though there is no need go-if it doesn't work, the implants are left in place with no harm to the body.  How many people do you know who have: 1.  Had the surgery?
2.  Have had serious medical complications due to the surgery?

PLEASE provide some DOCUMENTED FACTS to support what you say-something that has been written in a medical journal, please.

To save you the time of writing your stantard response, instead of providing FACTS to support your claims, I will write your usual reply for you:  "He is a Troll....." bla, bla, bla.  :P :o [smiley=huh.gif] [smiley=laugh.gif]
Title: Re: New and Unusual Med. Combo Working
Post by LeeS on Aug 1st, 2007, 10:31am
Here's a relatively recent abstract in respect of DBS in CH (my highlights):


Quote:
Lancet Neurol. 2006 Oct;5(10):873-7.
Deep brain stimulation in headache.
Leone M.
Department of Neurology and Headache Centre, Istituto Nazionale Neurologico Carlo Besta, via Celoria 11, 20133 Milano, Italy.

BACKGROUND: The therapeutic use of deep brain stimulation to relieve intractable pain began in the 1950s. In some patients, stimulation of the periaqueductal grey matter induced headache with migrainous features, indicating a pathophysiological link between neuromodulation of certain brain structures and headache. RECENT DEVELOPMENTS: Neuroimaging studies have revealed specific activation patterns in various primary headaches. In the trigeminal autonomic cephalgias, neuroimaging findings support the hypothesis that activation of posterior hypothalamic neurons have a pivotal role in the pathophysiology and prompted the idea that hypothalamic stimulation might inhibit this activation to improve or eliminate the pain in intractable chronic cluster headache and other trigeminal autonomic cephalgias. Over the past 6 years, hypothalamic implants have been used in various centres in patients with intractable chronic cluster headache. The results are encouraging: most patients achieved stable and notable pain reduction and many became pain free. All deep-brain-electrode implantation procedures carry a small risk of mortality due to intracerebral haemorrhage. Before implantation, all patients must undergo complete preoperative neuroimaging to exclude disorders associated with increased haemorrhagic risk. No substantial changes in hypothalamus-controlled functions have been reported during hypothalamic stimulation. Hypothalamic stimulation may also be beneficial in patients with SUNCT (short-lasting, unilateral, neuralgiform headache attacks with conjunctival injection and tearing)--a disorder with close clinical and neuroimaging similarities to the cluster headache. WHERE NEXT?: Neuroimaging findings in patients undergoing posterior hypothalamic stimulation have shown activation of the trigeminal nucleus and ganglion. This evidence supports the hypothesis that hypothalamic stimulation exerts its effect by modulating the activity of the trigeminal nucleus caudalis, which in turn might control the brainstem trigeminofacial reflex--thought to cause cluster headache pain. Future studies might determine whether other areas of the pain matrix are suitable targets for neuromodulation in patients with cluster headache who do not respond to hypothalamic modulation.


I'm not sure where people have got the notion that Professor Goadsby is in favour of the DBS procedure for intractable cluster headache, but he certainly wasn't a couple of months ago when speaking at the OUCH (UK) conference.

I believe that his view is that the DBS procedure is associated with a small risk of fatal haemorrhage (see above abstract).  Accordingly, on the basis of his experience with greater occipital nerve injections, neuroimaging studies of the effects of occipital nerve stimulation, and his concerns about morbidity and mortality of deep brain stimulation for CH, he began to give occipital nerve stimulator implantations (ONSI) to patients with medically intractable CCH.

For full details, see next post (it's too long to fit - cue limey-bird :P)

-Lee
Title: Re: New and Unusual Med. Combo Working
Post by LeeS on Aug 1st, 2007, 10:34am

Quote:
Lancet. 2007 Mar 31;369(9567):1099-106.
Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients.
Burns B, Watkins L, Goadsby PJ.
Headache Group, Institute of Neurology, National Hospital for Neurology and Neurosurgery, London WC1N 3BG, UK.

BACKGROUND: Cluster headache is a form of primary headache that features repeated attacks of excruciatingly severe headache usually occurring several times a day. Patients with chronic cluster headache have unremitting illness that necessitates daily preventive medical treatment for years. When medically intractable, the condition has previously been treatable only with cranially invasive or neurally destructive methods. METHODS: Eight patients with medically intractable chronic cluster headache were implanted in the suboccipital region with electrodes for occipital nerve stimulation. Other than the first patient, who was initially stimulated unilaterally before being stimulated bilaterally, all patients were stimulated bilaterally during treatment. FINDINGS: At a median follow-up of 20 months (range 6-27 months for bilateral stimulation), six of eight patients reported responses that were sufficiently meaningful for them to recommend the treatment to similarly affected patients with chronic cluster headache. Two patients noticed a substantial improvement (90% and 95%) in their attacks; three patients noticed a moderate improvement (40%, 60%, and 20-80%) and one reported mild improvement (25%). Improvements occurred in both frequency and severity of attacks. These changes took place over weeks or months, although attacks returned in days when the device malfunctioned (eg, with battery depletion). Adverse events of concern were lead migrations in one patient and battery depletion requiring replacement in four. INTERPRETATION: Occipital nerve stimulation in cluster headache seems to offer a safe, effective treatment option that could begin a new era of neurostimulation therapy for primary headache syndromes.


I personally, like many (but not all) others here, would not consider either of these treatments until all options (particularly alternative therapies) have been exhausted.

-Lee
Title: Re: New and Unusual Med. Combo Working
Post by George_J on Aug 1st, 2007, 10:46am

on 08/01/07 at 08:33:47, Klusterkopf wrote:
DBS can be reversed, though there is no need go-if it doesn't work, the implants are left in place with no harm to the body.  How many people do you know who have: 1.  Had the surgery?
2.  Have had serious medical complications due to the surgery?

PLEASE provide some DOCUMENTED FACTS to support what you say-something that has been written in a medical journal, please.


A sampling of published and/or clinical material:

http://www.mdvu.org/emove/article.asp?ID=329

http://content.karger.com/ProdukteDB/produkte.asp?Doi=64600

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=15956104&dopt=AbstractPlus

http://www.spasmodictorticollis.org/treatmentCenter_DBSCervical.cfm  (see second paragraph)

http://www.dystonia-foundation.org/pages/comparing_lesioning____dbs/150.php (see 6th paragraph)

http://www.geocities.com/parkinson_disease_saint_louis/Deep_Brain_Stimulation_DBS.html  (see:  "Potential Adverse Effects of STN/DBS" )

http://www.ubneurosurgery.com/handler.cfm?event=practice,template&cpid=17039 (see:  "Possible Complications" )

http://72.14.253.104/search?q=cache:yCJb2UQXB3EJ:www.permanente.net/kaiser/pdf/36020.pdf+dbs+surgery+complications&hl=en&ct=clnk&cd=39&gl=us&ie=UTF-8 (see:  "What are the Risks of STN/DBS" )

http://72.14.253.104/search?q=cache:2jksHb_xp6gJ:www.dbs-stn.org/downloads/061903_thereport.pdf+dbs+surgery+complications&hl=en&ct=clnk&cd=49&gl=us&ie=UTF-8  (see:  "Highlights of Some of the Responses to our Survey" )

Let's not pretend DBS is benign.  It's deep brain surgery, and carries significant risk of adverse effects.  


 
Title: Re: New and Unusual Med. Combo Working
Post by thebbz on Aug 3rd, 2007, 1:49am
Your my new hero taterboy!!!! :-* Thanks for the links George.
Dumbkoph......bite me troll boy. (Do not listen to this idiot.)
thebb ;;D
Title: Re: New and Unusual Med. Combo Working
Post by Klusterkopf on Aug 3rd, 2007, 8:47am
[quote author=LeLimey link=board=chspecific;num=1185723282;start=0#22 date=07/31/07 at 14:54:04]Whilst I view surgery for CH with a fair degree of horror having known a few personal tragic stories from sufferers I have met.... Surgery (in my opinion) is for people who have absolutely no quality of life left.
In this post you write that you have known "a few personal tragic stories from sufferers I have met" who have had DBS surgery, yet in another post you write that DBS surgery is not being done in the UK; further, you never answered my question about who these people are or where and by whom they had the surgery done.  You are a liar, it is as simple as that.  You and others attack anyone who has chosen to have DBS surgery...now your Dr. Goadsby is on record as having recommended that to one or more patients (not to mention that he is leaving YOU without telling you). The responses to my request for medical articles about the terrible consequences of DBS surgery resulted in a bunch of articles that said that the surgery COULD have serious consequences (a standard warning about any serious surgery), but there have been none.  In another post today a woman wrote that her husband had had a different surgery and had improved (but was now depressed over something else) and the next post said that the poster wished that she had contacted her before the husband underwent that terrible operation that is a waste of time...to which the originator responded that the surgery was successful.  Many of you have a knee jerk reaction when someone reports a successful surgical outcome and attack them.  This shows a total lack of objectivity, a choice of ignoring the facts, of an unreasonable, vicious hostility towards anyone who has chosen a treatment that does not agree with your views-just like the racism that I have seen on this board towards illegal Mexican and  legal Somalian immigrants.  A few members of this organization try to force their ignorant beliefs on others, whether those beliefs involve medical treatment or race.  What a shame.  Now that your great Dr. Goadsby (and he is a great doctor in this field) has not only recommended DBS for someone as a viable treatment but he is also leaving YOU Helen (for you, like many neurotics, personalize everything), what will you know do-start attacking Dr. Goadsby?  You are indeed a sad person, Helen-get a life that is not revolving around your illness, if you really do have it, and stop drinking alcohol.

If anyone wants some objective information about DBS surgery (and it did not work for me, so I have no reason to recommend it to someone, just present the facts), please sent me a privat message and I will answer.  Auf wiedersehen! [smiley=wave.gif] [smiley=wave.gif] [smiley=wave.gif] [smiley=wave.gif] und bis bald!
Title: Re: New and Unusual Med. Combo Working
Post by George_J on Aug 3rd, 2007, 10:03am

on 08/03/07 at 08:47:07, Klusterkopf wrote:
Whilst I view surgery for CH with a fair degree of horror having known a few personal tragic stories from sufferers I have met.... Surgery (in my opinion) is for people who have absolutely no quality of life left.
In this post you write that you have known "a few personal tragic stories from sufferers I have met" who have had DBS surgery, yet in another post you write that DBS surgery is not being done in the UK;


Readers of the referenced post will note that it refers to surgery for CH in general, and not DBS surgery in particular.  John Sckorohod, aka Klusterkopf, is putting his own spin on it.


on 08/03/07 at 08:47:07, Klusterkopf wrote:


further, you never answered my question about who these people are or where and by whom they had the surgery done.  You are a liar, it is as simple as that.


This from a guy who has pretended to be a dozen different people here from three different countries, who has pretended to have had DBS surgery when he has not, and who has, for some peculiar reason of his own, most recently pretended to be a native speaker of German when he demonstrably is not.


on 08/03/07 at 08:47:07, Klusterkopf wrote:
You and others attack anyone who has chosen to have DBS surgery...now your Dr. Goadsby is on record as having recommended that to one or more patients (not to mention that he is leaving YOU without telling you). The responses to my request for medical articles about the terrible consequences of DBS surgery resulted in a bunch of articles that said that the surgery COULD have serious consequences (a standard warning about any serious surgery), but there have been none.


Read the articles, and the previous posts about Dr. Goadsby.  Enough said about this nonsense.  


on 08/03/07 at 08:47:07, Klusterkopf wrote:
In another post today a woman wrote that her husband had had a different surgery and had improved (but was now depressed over something else) and the next post said that the poster wished that she had contacted her before the husband underwent that terrible operation that is a waste of time...to which the originator responded that the surgery was successful.  Many of you have a knee jerk reaction when someone reports a successful surgical outcome and attack them.  This shows a total lack of objectivity, a choice of ignoring the facts, of an unreasonable, vicious hostility towards anyone who has chosen a treatment that does not agree with your views-just like the racism that I have seen on this board towards illegal Mexican and  legal Somalian immigrants.


Equating some questions about the efficacy of surgery with racism seems very odd to me.  Perhaps someone else could explain this--or....don't bother.  It speaks for itself.


on 08/03/07 at 08:47:07, Klusterkopf wrote:
    A few members of this organization try to force their ignorant beliefs on others, whether those beliefs involve medical treatment or race.  What a shame.  Now that your great Dr. Goadsby (and he is a great doctor in this field) has not only recommended DBS for someone as a viable treatment but he is also leaving YOU Helen (for you, like many neurotics, personalize everything), what will you know do-start attacking Dr. Goadsby?  You are indeed a sad person, Helen-get a life that is not revolving around your illness, if you really do have it, and stop drinking alcohol.


You'll note the bizarre obsession with Helen.  This has been a theme in Sckorohod's "work" here.  I don't know why.  All I can say is that Helen's posts, and John Sckorohod's posts, speak for themselves.  


on 08/03/07 at 08:47:07, Klusterkopf wrote:
If anyone wants some objective information about DBS surgery (and it did not work for me, so I have no reason to recommend it to someone, just present the facts), please sent me a privat message and I will answer.  Auf wiedersehen! [smiley=wave.gif] [smiley=wave.gif] [smiley=wave.gif] [smiley=wave.gif] und bis bald!


By all means, give John a jingle if you want to play with the troll.  Personally, whenever he shows up, I just block whatever ID he's using this week.  Who needs notes from a wack-job with my morning coffee?

For new people, please be aware that John's usual tactic is to try to drive a wedge between people by playing them off against each other.  I suppose he gets some sort of thrill out of it.  Who knows or cares?  He's a troll, plain and simple.    

I won't waste anymore of your time with this.  John's starting to go critical now.  It won't be long before his head explodes and he posts something egregious and obscene that will get him banned.  It's happened a gazillion times before.

Best wishes,

George    

(Edited for spelling)
Title: Re: New and Unusual Med. Combo Working
Post by purpleydog on Aug 5th, 2007, 11:23pm
Klusterfopf

If you can't post respectfully, then STFU. Your trollness is showing.


Helen, we have laws against stalkers in the USA, you may want to check into it.

Chris, sorry to detract from your thread, I know how you feel taking all those meds, and how tiring it is. I'm with Helen, I'm not a doc, but I would be sure to try all options including alternatives, before even thinking about surgery. It's a big step, and in many cases, not a permanent solution.


http://www.clusterbusters.com


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